It was March 16th 2016. I was scrolling thru Facebook and randomly followed a link that led me to a page that led me to another page...I sat on my bed and hit share to raise awareness of National Trisomy 18 Awareness day. Over the years I had randomly realized what day it was only on accident and this time was no different...except it was. This time as I clicked to close out the page the border caught my eye. In a glimpse I noticed faces of babies AND children. It gnawed at me. I spent a few minutes walking around my room pushing the images away until I couldn't take it anymore. As I sat back down and opened Google I replayed all the information we had about Trisomy 18 and what we learned when our baby was not yet here. I knew statistically 1 in every 2000 pregnancy results in a baby with Trisomy 18 but most end in miscarriage. I knew statistically we had a minimal chance of carrying to term (we carried to 39 weeks), I knew if he was under 4lbs when he was delivered he would live for a very short time if at all. I knew if he was over 4 lbs his chances of survival for more than an hour increased drastically. I knew the insurance viewed his life as 'non-viable' and would only call hospice in if he did live but would not do anything else for him...as he would not thrive. I knew the only place he was safe was inside me. That is what I knew. Isaac was exactly 3 lb when he was born.
As I typed the words into the search box my spirit warned me...I could feel the anger rise before I even had all the information but something seemed wrong. I needed to know more...were these pictures of children living with Trisomy 18?
Hours later...article after article read...information on panels of medical professionals for and against trying to save these babies with Trisomy 18...the heart surgery...developed in 2003... 2003, 4 years before our little warrior...the insurance on the definition of life...I was unraveling. I have unraveled. Anger shot from the core of my being. I damn near threw my laptop across the room. I had conversations with people who knew us...who know me...and it was too big. After days I stabilized my emotions with a keen awareness that if I didn't I would end up in an institution. My anger would drown me. My emotions were a black hole. They have been a black hole. I have been cautious to feel anything...yes you read that right...feeling any of this is painful and if I let go..I go down the rabbit hole of sorrow and affliction...I don't quite think I can handle all of it yet. We don't talk about it. I don't talk about it. Church was/is not a place for peace...it has not been a place for peace. Some might say I'm hiding but realistically I'm surviving so that I don't lose myself for the sake of living. This does not mean I am without faith. Quite the contrary...my faith is even more real...the relationship with my Father seems even more real now that it is strained...but like any relationship that goes thru hard times I know I don't want to stay here. I don't want to be so hardened that I miss the intent of it. But that is my problem...what good could possibly have come from us not having been given the truth?...I just need someone to tell me he wasn't a viable candidate...or better yet someone to have at least given me the courtesy of a decision...but that was taken from us...from me.
I can barely write about it...This is going to take time. This is not a...lets have a come to Jesus meeting and all of a sudden you're okay...people desire faith to be that way...we want a shotgun solution to so much of life...people say it's not what you're dealing with it's HOW you deal with it...I say BS...sometimes it IS what you're dealing with. Perspective helps but sometimes we want our hearts and lives fixed with a magic wand...or a magical moment...and it just doesn't work that way.
So that's it...I've had every argument about it possible with myself....I already know God has us...I already know His involvement or lack of will someday make sense... I ALREADY know if Isaac was here my other baby may not be...I GET IT ALL...but it doesn't change the reality for me that I was not told about it. So maybe this is the first step to my healing...I started this newer blog to get away from the other one...something more positive...but in all reality...it's all part of who I am....who I am becoming....the continued story of Gods path for me.
So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. Give all your worries and cares to God, for he cares about you. 1 Pet 5:6-7
